By Vida Foubister
Issue: Advances in medicine have led health care professionals to focus on the cure of patients at all costs. However, there is growing recognition that pursuing extraordinary measures is not always in the best interests of patients. Palliative care, a growing medical subspecialty that was recognized by the American Board of Medical Specialties in 2006, offers patients and family members other options to relieve the pain, symptoms, and stress of serious illness. Unlike hospice care, which is designed to meet the needs of those approaching the last stages of life, palliative care is appropriate at any stage of serious illness and often is provided along with curative treatments.
As of 2006, only 53 percent of hospitals with 50 or more beds had established palliative care programs.  While the present growth in the country's aging and chronically ill populations is only going to increase the demand for such services nationwide, leaders in the field continue to emphasize the importance of ensuring these programs benefit patients. "Our goal is both to assure access to palliative care and to make sure that care is high quality," says Diane Meier, M.D., director of the Center to Advance Palliative Care (CAPC), a national organization affiliated with Mount Sinai Medical Center in New York City that provides training and technical assistance to health care professionals interested in starting or improving palliative care programs at their institutions. CAPC toolkits provide a standard and high-quality approach to establishing hospital palliative care programs. Measurement of clinical and financial outcomes is among the core principles the Center promulgates, as most programs rely on hospital and philanthropic dollars to sustain their operations and must continue to prove their value to these important constituents.
This case study examines the services offered by the Lillian and Benjamin Hertzberg Palliative Care Institute, the palliative care program Meier founded and directs at Mount Sinai Medical Center. It also reviews the outcomes that the Institute, one of the largest academic palliative care programs in the country, has achieved both clinically and financially.
Organization: The Lillian and Benjamin Hertzberg Palliative Care Institute was established in 1997 to provide palliative care consultations to Mount Sinai's sickest and most medically complex patients. In 2008, it served nearly 1,300 patients, a population that has been steadily increasing by about 15 percent annually. The Institute is part of the Mount Sinai School of Medicine and, as such, is involved in many educational and research activities.
The Palliative Care Institute provides services ranging from symptom relief to spiritual guidance through multi-disciplinary, team-based care. It has two full-time teams, each composed of an attending physician, nurse practitioner, and social worker. The teams also include a fellow and up to three Mount Sinai medical students, who must complete a mandatory, one-week rotation as part of their training. There is one full-time chaplain, as well as a full-time licensed massage therapist who manages a volunteer staff of six massage therapists.
Diane Meier, M.D., a geriatrician by training, serves as its director.
Target Population: The Palliative Care Institute provides consultation services at the request of patients' primary medical teams, which include specialists, at Mount Sinai Medical Center, a 1,171-bed, tertiary-care teaching facility located on the Upper East Side of Manhattan.
Founded in 1852, the hospital treats a culturally, ethnically, and socio-economically diverse patient population. The patients seen by the palliative care teams in 2008 were, on average, 65 years old, had a length of stay in the hospital of 68 days, and received palliative care support for nine days. Their most common diagnosis in 2008 was cancer (52.5 percent), followed by cardiac disease (8.5 percent), stroke and coma (6 percent), lung disease (5.5 percent) and liver disease (5.5 percent), HIV (5 percent), and dementia (3.5 percent).
Key Measures: The Palliative Care Institute assesses its performance based on the 38 National Quality Forum–endorsed preferred practices for palliative and hospice care quality (see Table 1).
Table 1: NQF-Preferred Practices: A Step Toward Standardizing Palliative Care and Hospice
Despite the fact that palliative care is a relatively young field, significant progress has been made in establishing quality metrics for programs providing these services. This process was initiated by the National Consensus Project for Quality Palliative Care (NCP), a coalition of the American Academy of Hospice and Palliative Medicine, the Center to Advance Palliative Care, the Hospice and Palliative Nurses Association, and the National Hospice and Palliative Care Organization, which published "Clinical Practice Guidelines for Quality Palliative Care" in 2004.  These standards aim both to explain the history and philosophical basis for palliative care and to standardize palliative care practices for the growing number of people with life-threatening or chronic debilitating illnesses, conditions, or injuries
Through this process, the NCP reached a consensus definition of palliative care. "The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care is both a philosophy of care and an organized, highly structured system for delivering care. Palliative care expands traditional disease-model medical treatments to include the goals of enhancing quality of life for patient and family, optimizing function, helping with decision-making and providing opportunities for personal growth. As such, it can be delivered concurrently with life-prolonging care or as the main focus of care."
The NCP also structured the theory and practice of palliative care into eight domains: (1) structures and processes of care, (2) physical aspects of care, (3) psychosocial and psychiatric aspects of care, (4) social aspects of care, (5) spiritual, religious, and existential aspects of care, (6) cultural aspects of care, (7) care of the imminently dying patient, and (8) ethical and legal aspects of care.
More recently, the National Quality Forum (NQF) identified palliative care and hospice care as national priority areas for health care quality improvement.  Using the "Clinical Practice Guidelines for Quality Palliative Care" as a starting point, it developed a set of 38 preferred practices that focus on improving palliative care and hospice care across the Institute of Medicine's six dimensions of quality. These practices are intended to be the first step in the process to generate palliative care quality measures, and thus include a set of expectations and associated best practices to meet these standards.
The NQF framework also includes a definition of palliative care. "Palliative care refers to patient- and family-centered care that optimizes quality of life by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice." It is anticipated that NQF preferred practices will eventually lead to the development of palliative care standards, with implications for reimbursement, internal and external quality measurement, regulation, and accreditation.
Implementation: Mount Sinai's two palliative care teams meet together every morning, from 8 to 8:30 a.m., to review their patient census. This census is created from information manually entered into the Palliative Care Institute's database from on a standard consultation form, the Palliative Care Consultation Report (see Additional Resources for this and other forms and evaluation tools referenced below). This form, which is completed by the palliative care team during their initial visit, following a referral from a patient's physician for help managing symptoms such as pain or reaching a care plan with patients and their family members, becomes part of the patient's medical record. (Though the medical chart is paper-based, the hospital scans all test results and medical notes into an electronic database following patient discharge.) In addition to summarizing recommendations for the primary team, this consultation form includes information for the palliative care team on the patients, their symptoms, their primary, secondary, and tertiary medical problems, and the family contact and phone numbers. It also has Institute-specific outcomes data that can be used to assess the effectiveness of palliative care consultations at meeting the needs of each patient. At the morning meeting, the teams discuss patients who have died or been discharged within the last 24 hours; long-stay patients, who have been in the hospital more than one week, are also discussed.
The two teams then meet independently from 8:30 to 9 a.m. to triage their patients for the day. Priority is given to patients who are in distress or who have an agitated family member at the bedside. A team member is assigned to patients based on whether their needs are medical, social, or spiritual. Each team supports between 20 and 25 patients daily and triages referrals for about five new patients.
On subsequent patient visits, the teams complete a Palliative Care Inpatient Progress Note, updating the patient's symptoms and progress toward identifying goals of care and establishing a safe discharge plan. The progress note and the original consultation report include summaries of the palliative care team's recommendations for the patient's primary team; the referring doctors also may choose to follow up directly with those working on the palliative care consultation.
There also are forms specific to the role of each member of the team, such as social worker and spiritual care assessments, and other forms that collect data necessary to review outcomes and serve as reminders to ensure quality care is being delivered. One of these is a final form, called the Palliative Care Syringe, which is filled out upon a patient's discharge or death to assess what the team was able to accomplish for each patient. All of these forms, with the exception of the Syringe, which is completed solely for review within the Palliative Care Institute, become a part of a patient's medical record.
Process of Change: Every month, Meier, the director, reviews 10 patient charts selected at random. Based on the information recorded in the consultation and assessment forms, she is able to either assure that the palliative care team is providing high-quality and appropriate care or identify areas that might need improvement.
Recently, this review led Meier to highlight the need for the teams' nurse practitioners to not only record clinical data on the assessment forms, such as a patient's blood pressure and medications, but also their synthesis of the patient's prognosis. This includes summarizing the achievable goals for a particular patient and the primary issues facing the patient, family, and team in reaching those goals. Says Meier: "Someone reading this chart should get a picture of who this patient is from your note."
Through this process, she also determined that some attending physicians were measuring but not routinely documenting patient symptoms, such as their pain levels. Says Meier: "I could go back to them with their actual note in my hand and say, 'You have to do this because it's concordant with National Quality Forum framework guidelines.' This is what quality palliative care looks like," says Meier. She is referring to NQF Preferred Practice 12: Symptom Measurement and Documentation, which calls on caregivers to "measure and document pain, dyspnea, constipation, and other symptoms using available standardized scales."  This preferred practice aims to increase the use of valid measurement instructions to assess the presence and degree of symptoms, as multiple studies have documented poor symptom management across care settings and diseases.
On a quarterly basis, the Institute completes a more comprehensive review of the data collected in the patient's electronic medical record and the Institute's Syringe form. Specific issues are then identified as focal areas for quality improvement.
This process identified the Institute's rising patient volume as an issue, particularly a concern that the palliative care teams will not be able to meet all patients' needs (see Table 2). "We've been trying to look at what we can do to either reduce the number of consults or get patients taken care of in a systems manner that would avoid some of these crises," during which some patients must wait several days for an initial consult as the palliative care teams are overwhelmed with urgent referrals, says Meier. As a result, the Institute has begun reviewing outcomes data to determine on which physicians and departments are referring patients. They are also attempting to identify the primary issues of the referred patients and recognize the long-stay patients.
Table 2: Increase in Annual Referrals to Palliative Care Teams at Mount Sinai Medical Center
||Number of Consults|
|Source: Palliative Care Institute, Mount Sinai Medical Center.|
The quarterly review has also been used to ensure that the palliative care teams are documenting patient and family discussions about goals of care and care planning in the appropriate consultation forms. As part of this process, teams have been reminded to record critical information, such as the name and telephone numbers of a patient's surrogate. "We were at 75 percent compliance with that, and that's been our focus for quality improvement for the last month," says Meier. "And, at least for the last month, we were up to 100 percent. That was only one month, but it's shining the magnifying glass on one particular issue and trying to fix it and then moving on to something else."
The Institute also addresses specific quality concerns raised both by hospital administrators and referring physicians. Currently, the Institute is working with the hospital administration to reduce the length of stay within Mount Sinai's Cardiac Progressive Care Unit, essentially a long-stay, intensive care unit for chest and cardiac surgery patients with delayed recoveries. "We were seeing patients who were in this twilight of being tethered to various machines and were neither dying nor getting better for very long periods of time—a year, two years," says Meier.
Long stays in this unit tie up critical care beds—the most expensive and scarcest beds in the hospital, which are needed for the care of patients after surgery. "The hospital is very concerned about these extremely long critical-care lengths of stay in post-cardiac surgery because it backs up all the way to the ability of their surgeons to care of patients and do operations," says Meier. "It's like a gridlock."
Together, they are working on a project to ensure that patients who stay longer than three weeks are automatically seen by a palliative care team. These teams work with patients and family members to establish goals of care and a discharge plan—meetings that often take up to 90 minutes and are beyond the surgeons' expertise.
However, performing consultations at the request of hospital administrators—and without a referral from a patient's primary medical team—is different from the way the Palliative Care Institute normally works. "We are consultants—that's a very important point," says Meier. "Our goal is to be responsive to the needs of the primary team." Thus, it's a difficult approach as the primary physician can choose not to follow the palliative care team's recommendations.
Indeed, despite investing a significant amount of time establishing health care proxies and developing goals of care with these long-stay patients and their family members, the palliative care teams have found that their recommendations are not always being carried out. A root cause analysis, performed using data collected on the teams' work in the unit, suggested that one attending physician was primarily responsible. Though the palliative care teams, as consultants, cannot directly control patient care, the data they generated gave the hospital administration, which initiated the project in the cardiac progressive care unit, the information necessary to address the problem directly.
Results: Based on the patient consultation data collected, the Palliative Care Institute has been able to demonstrate an impact on both clinical and financial outcomes.
Physicians are now requesting palliative care consultations earlier in their patients' hospital stay, a change demonstrated by the increase in patients' median Karnofsky score. (The Karnofsky score runs from 100 to 0—where 100 is "perfect" health and 0 is death.) Patients' median score rose from about 20 in 2002–2004 to about 30 in 2005–2007, suggesting that those seen in 2005–2007 were on average less sick at the time of their referral than patients seen in 2002–2004. The increase in palliative care patients discharged from the hospital alive is another improvement indicator; these discharges increased from 63 percent in 2005–2006 to 69 percent in 2006–2007. Says Meier, "At the beginning of our service, everybody died in the hospital. We were called the day before they died, we were called when they were moribund; that's no longer the case." Further, the Institute's number of referrals keeps growing, with the number of patient consults increasing from 612 in 2003 to 1,289 in 2008 (see Table 2).
The earlier referrals, as well as the increase in referrals, are likely due to the fact that palliative care consultations have been shown to lead to improvements in multiple symptoms (see Table 3). At their initial consult, for example, 32 percent of patients seen between 2005 and 2007 reported having moderate or severe pain; this dropped to 5.5 percent of patients at the time of discharge. Discomfort, another symptom that's evaluated, was initially reported as moderate or severe by 32 percent of patients during this same period; it similarly dropped to 8 percent of patients at discharge.
Table 3: Palliative Care Team Consultation Improves the Physical Symptoms* of Patients at Mount Sinai Medical Center (2005–2007)
||% of Patients with Moderate to Severe Symptoms at Initial Consult
||% of Patients with Moderate to Severe Symptoms 72 Hours After Initial Consult
||% of Patients with Moderate to Severe Symptoms at Discharge|
|Shortness of Breath
|*Pain was measured on a zero to 10 scale; all other symptoms were assessed using a modified Edmonton Symptom Assessment Scale, a 10-item symptom scale developed for use in assessing the symptoms of patients receiving palliative care as 0-none, 1-mild, 2-moderate, or 3-severe. During 2005 to 2007, the Mount Sinai Palliative Care Team consulted on the care of 3,100 patients.|
Source: Palliative Care Institute, Mount Sinai Medical Center.
A study published in the Journal of Pain and Symptom Management last year used an "After-Death Bereaved Family Member Interview" to assess the Institute's ability to improve the quality of care for patients with serious illness and their families.  A total of 149 family members—representing 54 palliative care and 95 usual care patients who died at Mount Sinai between April and December 2005—were surveyed by telephone about their overall satisfaction with their relative's hospital stay. The study found that "palliative care consultation is associated with improved satisfaction." Specifically, 65 percent of palliative care patients' family members reported that their emotional or spiritual needs were met, as compared to 35 percent of usual care patients' family members. Additionally, 67 percent of palliative care patients' family members reported confidence in one or more self efficacy domains, defined as the competence perceived by family members in participating in the care of the dying person, as compared to 44 percent of usual care patients' family members.
Finally, Mount Sinai was one of eight hospitals nationwide included in an analysis evaluating the effect of palliative care teams on hospital costs.  The study, published in the Archives of Internal Medicine, reviewed administrative data from 2002 to 2004, matching patients receiving palliative care to patients receiving usual care. It found that palliative care patients who were discharged alive had an adjusted net savings of $1,696 in direct costs per admission and $279 in direct costs per day; palliative care patients who died had an adjusted net savings of $4,908 in direct costs per admission and $374 in direct cost per day. These savings included significant reductions in pharmacy, laboratory and intensive care unit costs compared with usual care patients. "The return on investment is enormous for the hospital, and we were able to persuade our hospital administration of that using Mount Sinai-specific data," says Meier.
Mount Sinai supports the salaries of the Palliative Care Institute's clinical team, as do many hospitals with palliative care programs. But it's critically important for these programs to have outcomes data demonstrating their financial impact—which is achieved through cost avoidance as opposed to revenue generation. "Our data suggest that palliative care consultation fundamentally shifts the course of care off the usual hospital pathway and in doing so, significantly reduces costs," wrote the authors of the Archives paper. "This shift is likely accomplished by establishing clear treatment goals, reviewing current treatments to establish their concordance with these goals, and recommending and legitimizing discontinuation of treatments or tests that do not meet established goals." To help palliative care programs make a financial case to hospital administrators, CAPC has developed an "Impact Calculator" to estimate the overall cost savings and length of stay reductions that can accrue to an institution once a palliative care program has been established and has a sufficient patient referral volume.
Implications: The experience of Mount Sinai's palliative care program and that of other hospitals has demonstrated that these services not only improve clinical care and patient, family, and physician satisfaction, but also are associated with reductions in hospital costs. The number of palliative care programs continues to grow, and there is increasing recognition of the subspecialty within medicine. In addition to the American Board of Medical Specialties decision to offer certification in hospice and palliative care medicine, the Accreditation Council for Graduate Medical Education began accepting accreditation applications for hospice and palliative medicine fellowship training programs in 2007. (Because of the current cap on graduate medical education dollars for hospitals, these fellowships are funded mostly through philanthropy.) Further, the Joint Commission is currently assessing demand for a palliative care certification program, a step that Meier believes is necessary "to assure the quality of these programs."
However, even well-established programs such as Mount Sinai's continue to face challenges. The number of patients served by its palliative care teams has steadily increased, yet the Institute lacks the funds necessary to hire additional clinical staff. Unlike hospitals predominately serving Medicare enrollees, which are then able to bill on a fee-for-service system for most of their patients, Mount Sinai has a high number of patients—roughly 40 percent—who are covered by Medicaid. Further, New York State's Medicaid program pays little for these services, rates that vary widely by state. This means that the Institute depends on philanthropic support for about 30 percent of its operating costs, funding that Meier fears might decrease given the current state of the economy.
The Institute has developed tools, such as laminated cards summarizing the steps for running an effective family meeting, to help primary teams carry out some features of the consultation themselves, and thus reduce the volume of patients the palliative care teams must see. But most of the frontline clinicians simply don't have the confidence, skills, or time necessary to meet these patient needs. A family meeting to reach consensus on a patient's plan of care, for example, typically takes between 60 and 90 minutes. "A lot of the failures of communication and the quality problems in the hospital have to do with the fact that the things that need to happen require skilled human communication; that takes time," says Meier.
Changes to medical and nursing graduate and post-graduate curriculums to teach students how to respond to the needs of the country's chronically aging population could reduce some of the current burden. "If it was mandatory that nurses and physicians had to know how to conduct a family meeting and had to demonstrate competency in opioid management, our consult numbers would drop, no question," says Meier. "But because they are uncertain and know how vulnerable these patients and families are, they call the people they know are going to deliver the highest quality of care to their patients."
This study was based on publicly available information and self-reported data provided by the case study institution(s). The Commonwealth Fund is not an accreditor of health care organizations or systems, and the inclusion of an institution in the Fund's case studies series is not an endorsement by the Fund for receipt of health care from the institution.
The aim of Commonwealth Fund–sponsored case studies of this type is to identify institutions that have achieved results indicating high performance in a particular area of interest, have undertaken innovations designed to reach higher performance, or exemplify attributes that can foster high performance. The studies are intended to enable other institutions to draw lessons from the studied institutions' experience that will be helpful in their own efforts to become high performers. It is important to note, however, that even the best-performing organizations may fall short in some areas; doing well in one dimension of quality does not necessarily mean that the same level of quality will be achieved in other dimensions. Similarly, performance may vary from one year to the next. Thus, it is critical to adopt systematic approaches for improving quality and preventing harm to patients and staff.
For Further Information: Contact Diane Meier, M.D., director of Mount Sinai's Palliative Care Institute, at Diane.Meier@mssm.edu.
B. Goldsmith, J. Dietrich, Q. Du et al., Variability in Access to Hospital Palliative Care in the United States, Journal of Palliative Medicine, Oct. 1, 2008, 11(8): 1094–1102.
Clinical Practice Guidelines for Quality Palliative Care, National Consensus Project for Quality Palliative Care (2004).
A National Framework and Preferred Practices for Palliative and Hospice Care Quality, The National Quality Forum (2006).
L.P. Gelfman, D.E. Meier, and R. S. Morrison. Does Palliative Care Improve Quality? A Survey of Bereaved Family Members, Journal of Pain and Symptom Management, July 2008 36(1);22–28.
R.S. Morrison, J.D. Penrod, J.B. Cassel et al., Cost Savings Associated With U.S. Hospital Palliative Care Consultation Programs, Archives of Internal Medicine, Sept. 8, 2008 168(16);1783—1790.
The Center to Advance Palliative Care (CAPC) has developed several tools to assist health care professionals establish or sustain palliative care programs within their institutions. They include the Top Tools for Palliative Care Programs, a toolkit highlighting the best tools from palliative care programs across the country to plan a program; promote referrals and consultations; document the initial assessment and ongoing care; bill for care; collect relevant clinical, administrative, and financial data; evaluate a program's impact; and plan educational programs. A more recent toolkit, Policies and Tools for Hospital Palliative Care Programs: A Crosswalk of National Quality Forum Preferred Practices, aims to help programs develop the necessary policies and associated clinical tools and resources to ensure that they are meeting the NQF guidelines. For more information, go to the CAPC Web site.